Friday, 10 January 2014

Time to change for Time to Change?

The Time to
Change campaign is the biggest mental health stigma busting campaign in the
UK, receiving an estimated
£21 million between 2007 and 2011. Given
this level of investmentIwould hope it made significant
differences to stigma surrounding mental health problems. The truth is that it hasn’t, and in some areas
of stigma, prejudice has increased.

In the 2011 ‘Attitudes
to Mental Illness’ survey report, many results were worrying. It appears that the percentage of people who
would not want to live next-door to someone who has been mentally ill has risen
compared to recent years. Also, more of the general public believe that someone
should be hospitalised as soon as they show signs of mental disturbance. It’s
also more probable that a woman would be considered ‘foolish’ to marry a man
who has suffered from mental illness, even though he seemed fully recovered.

And these are at the tip of the iceberg. When it comes to measures of tolerance of the
general public towards ‘mental illness’, a decrease was found. The percentage of people who agreed we need
to adopt a far more tolerant attitude toward people with mental illness in our
society dropped from 91% to 86%. Given the level of investment described in the first
paragraph, it’s worth asking why this is happening.

Time to Change has a mission to educate the public and teach
that mental illness is an illness like any other. I believe this is the first point on which
the campaign is doing a massive dis-service.
The problem is that there is yet to be any conclusive evidence that this
is the case. There is no physical,
objective test that a psychiatrist can carry out in order to diagnose a mental illness. A mental health
diagnoses is a label that is based on a consensus about clusters of experiences rather than
laboratory tests. As Thomas Insel, the
director of The National Institute of Mental Health (NIMH) stated,
‘In the rest of medicine, this would be equivalent to creating diagnostic
systems based on the nature of chest pain or the quality of fever.’

The problem with spreading the myth that emotional distress
is a biological illness of the brain is that it discourages the view that we
are all unique human beings, reacting to the world around us. Difficult life experiences can mean a person
can become extremely distressed. Blaming
the brain creates a situation where people’s life stories are not heard, and
the need for social justice is ignored.
As Anne Cooke and Dave Harper put it in their article, When the Ads Don’t Work, ‘We don’t
talk about the stigma of being a woman, or being black; we talk, quite rightly,
about sexism and racism.’ The problem is
not a biological illness lying dormant somewhere in a genetic code. The problem
is that life can be really hard.

I don’t wish to diminish how helpful people have found
psychiatric drugs, nor how useful many have found a mental health diagnosis. I acknowledge that the language of mental
illness has all sorts of advantages, especially when applying for financial
support and getting time off from work.
I understand it also means that families and friends take distress a lot
more seriously, and of course, there is nothing wrong with wanting our
experiences validated.

But as with all language, the language of mental illness has
limitations. It creates a need for
treatment and the assumption that all people need to be cured. It also takes responsibility
away from individuals and places it in the hands of a mental health system to
cure them. A cure isn’t always on the table, though, and you may also get stuck
with a label for life: one that is dragged out time and time again, long
after you’ve finished using mental health services.

Someone recently said to me in a Twitter discussion that
they found it insulting that I referred to mental illness as ‘just’
distress. Let me be clear, there is no
‘just’ about my use of the term distress.
Distress can be debilitating, horrifying, excruciating, hell on earth even.
It is always real and important and always deserves to be heard and
understood. I find it saddening that we
need to be stamped as being physically sick before society takes our
understandable distress seriously. Our
distress isn’t real, it seems, unless it comes with a biological label.

But how does this all fit into Time to Change? Well, seeing emotional distress as sickness
or disease doesn’t seem to promote greater acceptance by the public. As Mehta
& Farina (1997) point out, seeing distress as a separate entity, one that
can only be controlled with the medication, increases fear. Societally, we can believe there is an entire
group of ticking time bombs who need to be controlled (the mentally ill). There also appears to be a perception that
there is a clear dividing
line between those who are normal and the mentally ill. Society, it seems,
has a good idea of what distress is and what causes it. When it is labelled as mental
illness, human behaviour is more likely to meet with fear and confusion.

Time to Change attempts to tackle such fear about the other
(the group of people labelled as mentally ill) with its ‘1 in 4’ message. The idea is that 1 in 4 people are affected by
any mental health problem in any given year.
The image is on the left. The idea to this picture is to educate the public that mental
illness can happen to anyone. But I ask you to think about what this achieves.
There are four figures. Three are the
same colour: a colour that blends with the background. There is one figure on
the edge of the group, coloured bright white.
It is designed to appear very differently to the other three ‘normal’
figures. I wonder how this does anything
less than reinforce the notion of otherness? Difficult life experiences do not select 1 in
4 human beings. We should instead
promote the idea that anyone can experience extreme levels of distress and
confusion. It’s good to talk, but talking about
biological illnesses is not always what this society needs. People instead need validation of the idea
that life is difficult and it is understandable to feel crazy sometimes.

I would like to hear what Time to Change could do to address
this issue of maintaining ‘otherness’. I
have asked them, not to get rid of mental illness language and understandings, but
to at least give spaces to those who do not find these concepts helpful. I have not seen a Time to Change advert featuring
anyone who does not use illness language or understand their experiences as a
result of a misfiring brain. Their
approach, I think, is that it is the language of mental illness that the public
best understands.

I’d like to offer the following example to suggest this may
not be true. A woman in the weekly space called Mad Monday’s (a community
initiative I initiated with the help of others to combat isolation and loneliness)
said she was labelled as a personality disorder and experienced severe
depression and suicidal ideation. She
said no one understood what she meant when she said those words and everyone
would go silent or change the subject.
Another in the group asked, ‘What did you say before you had any experience of the mental health
world?’ to which she replied, ‘Well I said I felt like shit and that I wanted
to kill myself.’ To which the other
person said, ‘And did people understand that?’
She had to admit that they did.

This backs up the point above, that people can connect with
distress without necessarily having an illness label. People hear the word schizophrenia and they
become frightened and confused. But talk
about experiences and they can
identify.

Time to Change additionally said they did not give spaces to
those who did not find the biological model useful, as it is difficult to
recruit people who have alternative understandings. But the language of mental
illness needn’t be ditched to challenge the idea that distress is a biological
illness.

I’d suggest that Time to Change needs a rethink. There are serious limits to offering a model
of distress so rooted in diagnostic thinking. Time to change perhaps?

Flo Bellamy is
co-founder of the Big Mad Experience. You can follow her on Twitter @Flo_Bellamy.

Ben, there is no *biological* test that can be done on an individual basis.Also, I'm unclear what "improving reliability" means in this context, as it is not provable that there is a biological problem. The only thing that can be ascertained is that a persons behavior is not "normal" and that too is by consensus, and depends on context.

Stigma is certainly interesting! The idea that many people still do not wish to live nextdoor to someone who has had a 'mental illness' diagnosis is an intriguing one. As someone who has recovered from severe mental illness, I can't help wondering what my neighbours might think if they knew of my diagnosis? Would it become an item of prejudice or could they focus instead on the fact that I'm a professional who has earned four University degrees since last being hospitalised? That I play an active rolein the community and believe my diagnosis is now meaningless? The list could go on. But yes, it is Time to Change. Studies show that stigma is eroded when people get to know someone who has a 'mental illness'. This seems a far more sensible basis for an anti-stigma campaign than questionable diagnoses and obnoxious visions of 'broken brains'. Time to wake up, I'd say.

Thanks, Flo, for a very articulate post. A 2013 edition of the British Journal of Psychiatry was dedicated to evaluating the Time to Change project. Perhaps the most interesting article is one that describes an anti-stigma campaign in Canada in 1951 implemented by a Dr Cummings and his wife. It had no effect whatsoever. Revealingly, the author reports that 'townspeople accepted (or ‘normalised’) a broader range of behaviour than did the researchers. Lay people had their own explanations for human behaviour, which were rooted in their knowledge of people's histories, and which they were reluctant to change' (Smith, M, BJ Psychiatry, 202, 49-50.) Well, how very annoying of them to be so reluctant to take on the expert view that was being offered to them! Smith concludes: 'We should resist the temptation to presume that "more of the same" might work in the future, since the Cummings remind us that we have been trying that now for 60 years.' Quite. But it seems the lesson has yet to be learned. We can at least be grateful that ordinary people are determined to cling to their commonsense views (or formulations, as I am tempted to call them) despite the pressure to do otherwise. Who knows, one day psychiatry might catch up with them.

My own view is that Time to Change receives significant government funding for two reasons: to create the illusion that 'something is being done' and to use 'stigma' to distract attention from wider and much more significant issues of social justice - poverty, discrimination, racism and our society's deep neglect of children and human values.

If Time to Change were to mobilise around injustice - as cause and consequence of psychic pain and dislocation - it would find its cosy relationship to Government a lot less comfy - but at least it would be making a real difference.

That's right they are, and volunteers, and speaking of and addressing social injustice would do far more to address stigma than anything else given political propaganda. Therefore they, and everyone else who fails to speak of this is a part of the problem

About the Salomons Centre

The Salomons Centre for Applied Psychology in Tunbridge Wells, England. We are part of the Canterbury Christ church University Department of Psychology, Politics and Sociology. We run training courses in Clinical Psychology and CBT and also practice improvement programmes for child and adolescent mental health services. On this site staff and trainees in the Department write about a wide range of issues related to applied psychology, psychological therapies, policy and health service development.